Knowledge of advance care planning and advance directives among US adults: Implications for health policy and practice

Background: Advance care planning (ACP) is the process of identifying and communicating values and goals in preparation for future shared decision-making in medical settings. Decisions are legally supported by an advance directive (AD) document designating healthcare agent(s) and future medical treatment preferences. Although important, ACP engagement in the United States remains low. Previous US research focuses heavily on ACP among older adults and those with life-limiting illness. Few studies have sought to understand knowledge of and engagement with ACP among the general population in primary care settings and potential barriers to completion of ACP. Objectives: This study examined US adults’ knowledge and perceived importance of ACP and ADs, their preferences regarding who—if anyone—would they choose to assist with completion, and their expectations of the time and cost associated with ACP and ADs. Design: An anonymous online survey was developed following pilot focus groups that identified misconceptions regarding ACP and ADs and the role of physicians in end-of-life decision-making. Questions assessing expected time and out-of-pocket cost were in response to feedback from clinical social workers providing ACP services in primary care settings. Methods: Participants were recruited through social media and emailed invitations to complete a short, online survey in Qualtrics. Two hundred and forty-eight adults residing in the United States completed the survey. Results: Participants demonstrated low to moderate knowledge of ACP and ADs, despite rating them as important. Most expressed a desire for professional assistance, but lacked clarity about which professional. They assumed that it was costly and time-consuming. Conclusion: Findings indicate persistent gaps in ACP and AD literacy among US adults, along with misconceptions about access, time, and costs that may be contributing to low engagement. Increasing public education and expanding access to knowledgeable professionals may help reduce barriers and promote more equitable engagement in ACP.